We need to document the need for each of our advocacy agenda items. The following statement sums up what we are up against.
"If one were to design a condition with features which would lead it to fall through the cracks of the American health care systems and the social safety net, one could hardly do better than Huntington's Disease." Huntington's Disease workgroup, published by the Robert Woods Johnson Foundation.
We will be collecting information from published sources if possible. I am probably going to do a publishable study of caregivers, stress, and services to add weight to our concerns.
In addition, we will need personal stories. Here's a link to my own personal story which Ron C. gathered along with others in support of therapeutic cloning of stem cells, as an example.